FINALLY!!!!!!!! Thanks to our advocacy efforts in Washington DC, especially our members Tony Pesare, Linda and Jay Jones, Trish and Bob Balfour, and others, "Social Security has added EOAD to the list of Compassionate Allowance Initiative, giving those with the disease expedited access to Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI)
"What is the Compassionate Allowance Initiative? Under this initiative, the Social Security Administration (SSA) finds individuals with certain diseases/conditions eligible for Social Security disability (SSDI) and Supplemental Security Income (SSI) benefits by the nature of the disease. While applicants still have to meet other SSDI criteria and/or SSI criteria, when it comes to the disability criterion, they are considered eligible by virtue of the disease and fast-tracked for a favorable decision about their eligibility for SSDI and SSI benefits."
For complete information, go to the Breaking News Section on the home page - www.thealzheimerspouse.com
While we had no problem receiving an approval for my husband's SSDI, our experience wasn't the norm. Most people with EOAD have to fight for an approval. I remember the enormous relief I felt when we went to the SS office to check on the status and I was told he was approved! It was great to have this off my plate, not to have to hire an attorney and potentially have to fight for years to straighten it out.
Joan, I believe that the two year waiting period you are referring to is for Medicare eligibility for those who are disabled under 65. Did the compassionate allowance situation affected that?
I would like to add a couple of things to think about.
I remember a few months ago that one of our men here told us that you only have 5 years to apply for SSDI from the date of diagnosis. If you wait past the 5 years, you lose the right to apply. He apparently applied for SSDI for his wife and was told that after 5 years from diagnosis that his wife was no longer elible.
Also, in our case with no diagnosis for many years, if you have earned SSDI rights by working and then you don't work for 10 years, you lose the right to apply for SSDI. My DH has not work outside the home for 11 years this spring. On his last information letter from SS, it said that he is no longer eligible to apply for SSDI because he hasn't worked in 10 years. I'm sure that if he worked a certain number of quarters that he would again be eligible.
I had so many e-mails coming in from Washington this morning that I may have mixed that up. I believe you are correct about that. I deleted it.
In any case, the situation with SSDI was that EOAD was not on the Compassionate Allowance list because just about everyone in the world believed that AD only affected people in their 70's, 80's and 90's. SS figured all these "old" AD people were collecting SS, so why did they need SSDI? Young AD patients were not on their radar. Actually most people in the SS offices never heard of EOAD, and were quite skeptical. They were almost always denied SSDI without years and years of grief and appeals. Thanks to the advocacy efforts of the members I mentioned, and thousands across the country, EOAD patients will now be on the fast track to approval for SSDI.
Joan--In my mind, it would make sense to give immediate access to Medicare if people are approved via a compassionate allowance. If that's not the case, I hope that the Alz Assn will take that issue on next.
You still have to wait the 24 months after approval of SSDI to receive Medicare. My husband was approved quickly through the compassionate allowances for FTD but we still have to wait that period for Medicare. Remember that the compassionate allowance just means that your claim should be processed faster but it doesn't always mean an approval. Someone I know who's husband has an FTD diagnosis was not approved for SSDI because the caseworker decided he could still do manual labor!!! His cognitive ability doesn't allow him to follow directions. Now they have to appeal. Insane!!
We hired an attorney to apply and got approved quickly. Maybe this breakthrough will prevent others from needing to consider the added expense of hiring an expert.
Deb you are so right, it is INSANE! We used an attorney and got the SSDI for Depression and Anxiety, before we knew the FTD dx. Luckilly, Jim qualified for Medicaid.
Emily, you are right about the help of an attorney, it makes a huge difference.
Now, someone tell me how they can qualify someone as disabled, (THEY CAN'T WORK) and NOT GIVE THEM MEDICAL COVERAGE (MEDICARE) FOR 24 MOS. How are they supposed to get flipping medical care!!!! Leave it to the beaurocrats to make a half-assed change!!!!!
The 2 year waiting period for Medicare is a separate issue with a separate governmental department. Different Red Tape. I am going to the DC Advocacy summit at the beginning of March. I will have lots of information for everyone before I go and when I return.
Susan L--- they can do the 24 month wait because that's the way it's all set up. If you think that's nuts, here's another. a person becomes severely disabled--say quadriplgic. The canb be approved for SSDI, Mdicare/Medicaid, and Vocational Rehab. Go back to school and get a degree in a field in which they can work--say teach High School. Included in all their help is provision of an attendant to get them up, dressed, fed; and an equiped handicaper vehicle to get too work in. THEN, when the person lands a job(entry level) and it appears to bne working out, they stop providing the attendant.
They'd rather support the person on disabilioty and provide the aide, than provide the aide and have the person supporting himself, and that provision would only be needed until he person has mod up the adder a ways.
Carosi and Susan L, I can give a good example of this. I had a patient who was injured at age 17 playing highschool football. He was quadraplegic (paralyzed from the neck down). I saw him when he was in his 40's. I wanted to do some tests on him, but he objected, saying that he could not afford to pay for them. When I suggested that Medicare would cover it, he replied that he did not have Medicare and was not considered disabled by Social Security since he had a full-time job (he had his own real-estate and insurance agency). Obviously, he could not get any other medical insurance.
Deb--we were warned by our consultant that SSA might use that manual labor excuse to deny my husband's claim. The backup plan was to have a diagnosis of arthritis made--he said that virtually everyone over 40 has some arthritis starting somewhere--and that would rule out a manual labor job. Thankfully, we never had to resort to that, because the claim was allowed.
Even though my husband was approved on the first try, for so many others it takes years for approval. This was great news for all of us living with eoad.
Someone from our local chapter called us last night to tell us this good news. The next item on the association's list is to eliminate the two year wait for Medicare. Many of us in Georgia have already visited our Congressman asking them to support this bill.
I attended a seminar the other evening presented by a financial institution re filing for Social Security early vs waiting until full retirement age. Disability was not a topic but the question did come up from an attendee. The speaker (a rep from SSA) stressed that it was very important that the medical records accurately reflect the disability. She said when reviewing applications SSA looks for particular language in the patient records. It’s my personal opinion based on what I heard that it would be helpful to know if your medical providers are familiar with the SSA disability process and if they’ve ever successfully helped a patient qualify.
I did not want to start a separate topic for this - Today's blog is titled SPOUSE POWER, and it relates to this discussion. I invite you to log onto the home page - www.thealzheimerspouse.com - and read the blog. You can post comments here.
YEAH!!! I wish it would have happened sooner as it was a pain in the patootie to get SSDI, BUT I am so happy for all those spouses whose husbands/wifes are diagnosed from this time forward. At least they will have one less thing they have to fight!
Weejun--You are right about the specific language. Here's what our consultant said the doctor should provide:
--what the diagnosis is --notable problems with short-term recall which have been progressive and affect daily functioning --cannot handle complex and detailed tasks --difficulty in stressful situations --learning new information is extremely difficult and very hard to retrieve --could handle known, simple repetive tasks
The simplest way is to give the doctor this wording and he can include it in a letter to you, you review it and provide it to social security.
I'm not sure if anyone here has a spouse who has PPA (primary progressive aphasia), a variant of FTD, but this disease was also added to the compassionate allowances list.
A wonderful and badly needed step in the right direction for those dealing with EOAD. But Joan's point about making it happen by ourselves if the Alz. Assoc. is not there to help is also very important. I think that the more I learn about support services and programs for AD ... and their spouses ... the more I feel that people like Joan and those who post comments on this website are the ones who must really make things happen across the country. Relentless pressure on politicians and national organizations who can effect change is extremely important ... but we also must feel empowered to take things on by ourselves, such as starting our own support groups, like the fictional Alice did, if we feel that the national organizations aren't there for us!
My hb was approved the first time. I don't know what the doctor sent in other than the medical records I included with the application, but for my comments I gave lots of examples of how short term memory loss makes it impossible for anyone to want to hire him. I ended with something like: I have worked hiring people in the past and I would never hire anyone who can't remember what you just told them. That I would not want the company I worked for to have that liability that comes with the inability to remember directions and safety. I used the example for safety how he was using the table saw and almost cut his finger off yet didn't realize he had even did it. When we went to the neuropsych doctor from SS he said I did a good job of explaining how his memory loss impairs his ability to work any job, so I guess it did make an impression.
The changes that are being made are wonderful for all of us.
My dh has EOAD and it makes me sick to have people say " But he is the same age as you are". Most lay people have no clue of this disease and the impact it has on everyone. You would think that the doctors should be the first to know about this but I believe that the more lay people that gets aboard with this disease the sooner word spreads and more will be done. Yes the spouse's have a lot to do with the help being given and it is up to us to advocate for each other to get even more help and information out there.
Horray for all of us............. We small people can move mountains if we group together......